Life as a Weather Balloon ( cold front flare)

I am the perfect weather balloon. Mother said cold front was coming yesterday, but my body say no, everything's cool.

Late last night I have a terrible spasm that felt like a menstrual cramp, only in the bladder, and that HURTS.

I wake up today in pain... and wouldn't ya know, the cold front was a day late.



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As I stated earlier the best coping strategy is to distract yourself. There are some flares you can control such as stress or food flares, but then there are others when you can do nothing like a flare caused by the weather. The only thing you can is take all your pain meds, tether yourself to a heating pad, and then distract yourself. Unlike the advice my mom gives me, sleeping does not work if you are in pain. Works great if you have the flu, doesn't work if you have IC unless there's a drip of morphine going into you.. not to mention holding in urine too long while sleeping all day is just going to make it feel worse when you wake up.

That said, I was pretty happy to open my present and find Skyrim. I was like, cool, I'll go play it now! I remember the soothing music from its predecessor Oblivion helped me stay relaxed a lot.

Well, Skyrim had DRM added to it. For non-gamers, that means that you must have internet connection. For someone living with a 10gig cap of bandwidth, and when the DRM makes you DOWNLOAD the game despite the fact that you BOUGHT the CD, its going to cost a lot of time and money. So I started off mad.

Then about 14 minutes into the game it froze and locked up. I run a 64bit system which needs 4gigs of ram. Skyrim was made only to use 2gigs. So, the memory is getting clogged. Someone fixed this, but with the DRM patch that was forced on me with the CD it broke the fix. So I am the unhappy owner of a game that crashes constantly.

Oddly, I find that anger helps my symptoms. Probably because it distracts me. But I did sent corporate a nasty email.

As for the flare itself it's pretty nasty.. despite my drug-lord level of pain pills, its just helping me ignore the pain rather than get rid of it like it usually does. There's really nothing else I can do. It's feeling pretty bad now. When I'm in this state I don't want to talk to other people or play with them. I usually just browse forums, blogs, or single players games. Guess I'll save every 2 minutes in Skyrim.

Why I Hate Everyone

This is a post written amidst a flare. I will be hateful, politically incorrect, and highly offensive with bad words. This is also a public post because it needs to be heard, or at least, what IC does to a person's mentality.

I hate everyone today. I had to go get blood drawn but had to be driven an hour there and an hour back to the lab. I didn't feel the needle. It went great. I was already in a flare. I've been in once for the past 2 days, but the meds I've been taking made it bearable and I could play games and distract myself. Walking and leave the house is a bad idea. But I had to today.

I brought heating pad with me. Ride there and ride back as okay, but we needed to go to walmart to pick up Kleenex and maybe something edible for me. I find that matching my usual walk fast pace just makes it worse, so I ask James to tiptoe with me as it's the only way I could do it. All the wheelchairs for taken -- by fat women. Fat fucks who, SURPRISE, riding in a wheel chair isn't going to fix that. And these women all seemed chipper. Well of course, they weren't sick. maybe walking just her because they were so fucking fat. Who knows. So I just brave it out.

I get to the cereal aisle and a spasm punches me in the gut. This type of pain is hard to describe. The simplest way is to say imagine the worst bladder infection you've ever had, but no medication will stop the pain. But I'll say it felt like I hadn't urinated for 24 hours beforehand, and this new spasm felt like my bladder was ripping apart. I told James I was out of there. I had to go back to the car, put on the heating pad, and lay down.

I blame it on the fat fucks. If I could have gotten a chair the jostling wouldn't have triggered this. I wish their leg/back pain would kill them, but it won't, so they'll just get fatter and keep using the chairs. This is why I want my own damn wheel chair. This season is destroying me like it always does. Will I graduate this year? I have no idea. If the IC behaves, yes, I will. if not then no, I have to waste yet another year on online courses and another year keeping me away from getting a job I can do online.

I hate all the healthy people. I hear this is common with cancer patients too. I hate them. I despise them and their first world problems that they complain about. I'd trade them.

Do you want to pray for me? Please do. Even though I despise organized religion of any kind, I'm not a scrooge about it. I prayed constantly last year. Deus ex machina didn't happen.

I'm hurting bad. I can't even play with James and it feels like I'm wasting his vacation. I went to bed early last night. I woke up early. It doesn't matter what time of day it is, it will hurt. Until some asshole finally decides to do research on temperature change and chronic illnesses I think we're all fucked. I know my other chronically ill friends are having a hard time this winter too. Something is happening, but no one cares to research it because it brings in no money.

This isn't an infection I don't think because last night I felt pretty normal. The morning/dayti flares are what are destroying me.

I'm taking Valium, soma, elimiron, utira-c, oxybutinin, and benedryl, and even with all this shit still I feel like my bladder is destroying itself.

Now factor in the only thing I can safely eat are mostly tasteless things. Plain rice, some wheat, and if I'm brave then mild cheddar cheese. So I sit watching these fat fucks stuff their mouths with McDonald's breakfast items (which I love and crave) and then watch them scoot on out with the customary Wal-mart scooters and I'm expected not to hate them.

I'm usually not a hateful person, not ever, I don't even hate Hitler, I just want to understand why he did what he did and say it was wrong but from that viewpoint (evidently his mother was impregnated by a rich Jewish guy she worked for, or so the school databases suggest with some evidence such as Hitler turning the graveyard his "dad" was buried in into an artillery range so that everything would be destroyed..) So no, I don't hate him. Not even him.

But now? Today? At this moment? I'm filled with it for everyone. Even those who didn't take the chairs. I suppose it comes with the "why me?" sentiment.

So what now? James won't and can't move to South America every winter. I can't work outside the home unless this goes into remission. And at 26 I am kicked off my step dad's insurance plan. That blood test that I have to do every month costs $140 by itself without insurance. Elmiron costs $500, and I won't even bother looking into the others unless I want to depress myself me. I don't think this thing will go into remission within 3 years.

So what do I do now? The worst part is NO ONE CAN SEE THIS. It is not visible. If I took the chair I'd be glared at. If I accepted my doctor's offer for a handicapped parking spot I'd be glared at. But right now I am handicapped, badly handicapped. No housework will be done today, and my mom won't let me forget.

If my bladder is removed it'll do nothing. It's the muscles triggering it. But they're connected to everything down there and can't be removed.

Will the Republicans pay for my medications? No. Will the Democrats? Maybe, but I'm not so hopeful. I can't get disability because I never had a chance to work because of this. I can get SSI, but when look at me and my age and depending on the day I can look pretty damn healthy I suspect I'll be denied repeatedly. Will my urologist vouch for me? Maybe. But she's already stuck her head out for me by giving me all these pills and I'd hate to put more work on her. In the end I may have to. I guess along with James, Chris, and my other chronically friends she is the only other person I don't hate right now.

So now what? Seriously. Tell me what you would do in this situation. I just want to get my degree and go for a masters. I would love the hell out of being a teacher student. But I can't. I'm crippled, but not crippled enough for the government to help me.

I'm cross posting this everywhere. THIS IS IC AND THIS IS WHAT IT DOES. THIS IS WHY I DON'T VISIT MY FAMILY. THIS IS WHY I CAN'T VISIT MY GRANDMOTHER IN THE HOSPITAL. THIS IS THE REASON MY BOYFRIEND MAY EVENTUALLY BREAK UP WITH ME (though he's been a trooper so far). You can all stop making me feel guilty. Perhaps it'll lessen my hate a little.

Hurting badly

Burning isn't a usual part of my IC, but with the weather its started to constantly burn and when I move the entire thing spasms. I makes me not want to stand. No research has been done on weather and IC, but it really needs to be done. A lot of ICers have extra problems during the cold months.

This would be the thing keeping me from getting a job. My normal pain can usually be ocontrolled, but despite taking valium, oxybutin, and soma it only help slightly. I need to move to the equator or something.. though my cousin said Los Angeles never gets cold or hot.. But like he said, cost of living there is insane.

So I remain tethered to my heating pad. My Grandmother's burial was today and thankfully I made it there during my 4 hour safe period. Look at a few of the grave, saw quite a bit of WWII vets who died in the 70s so they survived the war, but found one that died in '44... so.. he didn't live. There was one Vietnam one who died in the 60s, so I assume he didn't survive that war.. Saddest one was a family plot. Me and my nephew look confused at the graves, because all there was was a line of cement with markers over there. Said nephew assumed we were standing on the bodies when when I looked at their birth/death dates it turns out each one never lived past a year so their bodies fit under the grave markers.

Then I learned through looking at my grandmother's family plot that my pawpaw, her husband, had a first wife and an adopted son, both dead. The son died at 7 years old. mother said from Leukemia. Wife died a month after, mom said it was a blood clot during surgery. I don't understand how that man could keep going after losing his family within two months.

The Winter Flare

I don't know how much the temperature dropped. All I know is that last night things were warm enough to have the air conditioner on for awhile. I wake up and notice my boyfriend has out the heat on full blast, and this is a guy who finds 70 too hot.

I do my daily chores and find it it feels kinda chilly. Usually I get a 4 hour break from pain right after waking up. Today wasn't like that. Pain and burning from the start, I took all pain killers and my eyes are terribly dilated but I still hurt.

My Grandmother just died. Original plans was wake on tomorrow, which I could attend. Now they've moved everything to Tuesday. I have school on Tuesday. The two events happen at different times, but I'm flaring and I only have a 4 hour break. I must choose. Usually I'd pick the funeral, but it is the week before finals where teachers tend to give study guides to the "good" students who came to class. I need that guide. I'll email her and ask for notes and everything.

If that fails then I get to look like a worthless, selfish member of the family because no one understand the type of pain this disease causes.

This related to the spoon theory (http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory-written-by-christine-miserandino/). I don't have enough spoons for both. I told my mom this and she got very mad and disappointed to the point of making me cry. I DON'T WANT TO BE LIKE THIS. I WANT TO BE HEALTHY. It's not my fault, but that's never the message conveyed from her.

Winter is my enemy

During the warmer months I wake up with no pain. Now after first urination everything is sore and feels swollen then generally declines until its time to go to the bathroom again.. then if I haven't doped myself up enough it'll start spasming and I either:

1. Attach myself to a heating pad
2: Nuke my system medicine and go to sleep

I have one last final paper to write for school and that needs to be done in 3 hours before spasms set in. Tomorrow I'll have to start proof-reading everything. I'm not sure how I'm going to make it to school after this week with everything going crazy. I'll need all my meds and will have to find a driver.